... stories about caring for those who suffer from memory loss. Words of encouragement, tips for a safer and happier day, as well as practical information for caregivers, are woven into each heartwarming story. Make this feel-good blog a part of your day as Elaine Lohrman -an author and educator whose mother suffered from Alzheimer's - gives insightful advice for beating the stresses of caregiving.

Thursday, August 15, 2013

Vision Problems in Alzheimer's...

I can’t really recall a time when Mom was not wearing glasses.  As far back as I can remember, some form of eyewear sat firmly across the bridge of her nose.  As the years passed and fashion changed, so did the frames - from maroon cat’s eyes to blue ovals and then brown oblongs – they came in many colors and shapes.  Most recently, the bigger the better in order to accommodate thick trifocal lenses, which she strongly denied she wore!

At some point while in the Alzheimer’s unit she called home, her own glasses went missing and we found someone else’s frames sitting atop her nose.  It didn’t seem to bother her one bit that the prescription was very decidedly not her own or that the nose pieces needed adjusting to keep them from sliding down her face.  Mom was blissfully unaware of the decline in her vision, which greatly surprised me as she had been so protective of her eyesight in years past.

My husband and I had noticed a change in her vision several years before she was diagnosed with Alzheimer’s, perhaps, most noticeably when she awakened one night screaming that there were rats all over the carpet around her bed.  Even with the glasses back on her nose, she was convinced that the white circles on the dark carpet were indeed of the rodent variety.

For some time we had difficulty getting her to board an elevator, and escalators were completely beyond her.  We did not realize at the time that these changes in her ability to see and react as most of us would, was actually an early sign of Alzheimer’s.  It was obvious that Mom didn’t see and interpret things as they really were.  She was living in a whacky topsy-turvy kind of alternate world which we shrugged off as just another one of her many eccentricities.

Her vision problems went beyond the usual far-sightedness and cataracts to a deficit in looking at an object and being able to identify what it was.  A strand of onion caught in the bottom of the dishwasher became a worm.  The speckled pattern on a bedspread became an army of ants marching across her bed.  Cups and plates landed on the floor instead of on the countertop.  Daily living was a constant struggle as socks refused to stay matched and she had trouble laying out clothes for the day whose colors harmonized. 

Mom was frustrated by a good many things that she thought she could see clearly, but evaded her understanding.  The world was not what she remembered.     

* * *

It wasn’t until recently – a year after her passing – that I myself began to understand the extent of vision problems for the elderly, and particularly those with dementia.  I had seen the term “spatial relationships” on lists of Alzheimer’s symptoms, but did not really understand its complexities and impact on the individual’s life.  Only when doing research for this blog posting, did I finally realize the depth of Mom’s frustration over a world that was not what it seemed. 

Spatial relationships – and for a while I thought the term was “special relationships” and in some sense that was correct – is the ability to see and identify an object’s relationship in space and time to another object.  It sounded awfully sci-fi to me and I had many other things to worry about - how to get Mom to stop driving, for one, and how to wrestle the checkbook out of her hands, being another.  Little did I know that both of those daily living skills were, in fact, compromised because her spatial perceptions were compromised!     

(For more information on dealing with vision problems and Alzheimer’s, read the sidebar to the right.)  

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“A Bandaid for the Caregiver” is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities.  In each difficult moment there lies an opportunity for love.

Journey with courage,

Elaine  


Nominated for a 2013 Pulitzer Prize, "Conversations with Nora: A Family’s Journey with Alzheimer’s" follows the journey of two sisters, Allison and Louisa, as they each struggle to understand the grip of Alzheimer's on their family. The novel, inspired by a true story, takes the reader from the sisters' first realization that something is wrong with Mother; through her agonizing denial and efforts to thwart the daughters' attempts to care for her; and then plunges the reader along with the entire family into the dark and confusing maze of dementia. The path to finding a place where Mother will be secure and can feel at home is filled with many obstacles, not the least of which are her own fight for independence and a medical system that seems unwilling to help them. Told through the conversations between the eldest daughter Allison and her friend Nora, the healing power of love and caring takes on a fresh meaning. Nora's supportive, patient, and nonjudgmental presence provides a safe place for Allison to move through a raw and painful reality toward healing.

Available in Paperback and Kindle
                                          Amazon.com 

Thursday, August 8, 2013

Band-aids Can't Cure Alzheimer's...

Band-aids are a big part of childhood, aren’t they?  There was a big box of them prominently located in our kitchen cabinet next to the garage door where they could be easily reached for those scrapes and cuts that we encountered almost every day of our very active lives.  Still vivid in my memory is the picture of my sister perched atop the red metal step stool in the corner of the kitchen, tears rolling down her cheeks, while my mother spoke soothing words to her as she placed a dap of ointment on the bandage and wrapped it around my sister’s outstretched finger.  The tears were wiped away and a kiss planted on the top of her head and off we went again on our next backyard adventure.        

The older we got, the bigger the bandages needed to be – and sometimes a brown adhesive strip was simply not sufficient for the injury, my broken collarbone, as an example.  That injury took a huge sausage roll-shaped cotton pad twisted into the shape of a figure eight to hold my broken bones in place until they mended.  The time I ran across the basketball court and smacked my head into a teammate’s brow required many stitches and a wrap that encircled my forehead like a mummy.   

For some of our injuries, there were no bandages large enough or flexible enough to get at all the places they were intended to mend.  Louisa had an accident on the slip-and-slide and suffered a concussion.  The only bandage that brought about healing for her head was rest, a difficult prescription for an active eight-year-old.  Then, of course, were the broken hearts when Mike or Larry forgot about a dinner date or broke up with one of us.  Teen crushes required much more than ointment on a piece of cotton padding to overcome.   Mom was always there with a sympathizing ear and a hug.  Her encouraging words that the “right boy was out there somewhere” became the bandage that protected our wounds until they healed.   

We have all suffered many scrapes and bumps along the way since then – broken bones, broken hearts, broken dreams – but, the most difficult adversity of them all was when Mom was diagnosed with Alzheimer’s and we became her caregivers.  Large or small, no amount of bandages in the kitchen cabinet would cover the wounds we were dealt quite innocently and unintentionally at the hand of the one who had once cared for us.  

* * *
Band-aids cannot cure Alzheimer’s, but somehow the thought of a protective covering eases the pain just a bit and makes the wounds seem more bearable.  Caregivers suffer so much in giving themselves over completely to the care of someone that once loved them unconditionally.  Caregivers need an endless supply of band-aids in all shapes and sizes, and sometimes they appear in the form of a friend to talk to, a tip that helps calm a parent’s fears, or an extra hand to help with the daily chores.       

* * *
“A Band-aid for the Caregiver” is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities.  In each difficult moment there lies an opportunity for love.

Journey with courage,

Elaine  

Author of…  “Conversations with Nora: A Family’s Journey With Alzheimer’s”

Nominated for a 2013 Pulitzer Prize, the author's first novel "Conversations with Nora: A Family’s Journey with Alzheimer’s" follows the journey of two sisters, Allison and Louisa, as they each struggle to understand the grip of Alzheimer's on their family. The novel, inspired by a true story, takes the reader from the sisters' first realization that something is wrong with Mother; through her agonizing denial and efforts to thwart the daughters' attempts to care for her; and then plunges the reader along with the entire family into the dark and confusing maze of dementia. The path to finding a place where Mother will be secure and can feel at home is filled with many obstacles, not the least of which are her own fight for independence and a medical system that seems unwilling to help them. Told through the conversations between the eldest daughter Allison and her friend Nora, the healing power of love and caring takes on fresh meaning.  Nora's supportive, patient, and nonjudgmental presence provides a safe place for Allison to move through a raw and painful reality toward healing.

Available in Paperback and Kindle